Primary Ovarian Insufficiency

[Pointofinterest]

Is anyone else in this situation? For anyone unaware what this is it is essentially having experienced menopause naturally before the age of 40.

If you're looking for other women to talk to, the Daisy Network is a national info and support group run by consultants.

You can access their info online, to join the forum and have access to events across the UK, there is a small joining fee.

Yes I have POI. What do you want to know? You don't have to have menopause before 40, I am still in peri in mid 40s but it just means your ovaries stop working normally before 40 resulting in irregular periods.

Yes. I was early 30s.
Found the daisy network paraphernalia very patronising.

I've had a look on the daisy network and I'm put off that any information and "help" has to be paid for. I'm just wondering what other women's experience is, I've been declared post menopausal before 40 and am still having difficulty obtaining HRT.

I have never been on HRT as I was deemed too young
I had a few hot flushes but that is about it.
Not worrying about periods or getting pregnant were fantastic.
Do you have any symptoms? Or is it the horror stories going about that are causing concern?

What do you mean by paraphernalia?

I think the website itself is quite informative.

Their website has info there which anyone can access.

To access forums or events around the country, there is an joining fee.
They are a very small charity run by consultants at the Chelsea and Westminster Hospital.

I have never been on HRT as I was deemed too young

How old are you now? The medical advice in the UK has been around for at least 20 years, that women with early/premature menopause need supplementation to 50-ish at least. It's in the NICE guidance from 2015, but was in practice long before then.

It sounds as if your dr was out of touch.

The science is very clear on premature menopause and indeed there was only another publication in the press a few weeks ago about the importance of treating women with POI in order to prevent heart disease (and bone loss.)

If you have never had a DEXA scan since your periods stopped, and you're not using HRT, the medical advice is that you do have an assessment of your bone density.

It's not something you can assume is okay.

@Pointofinterest Are you in the UK?

The NICE guidance from 2017 on POI and that they should seriously consider HRT to age 51-52 at least.

https://www.nice.org.uk/guidance/qs143/chapter/quality-statement-3-managing-premature-ovarian-insufficiency#:~:text=Women%20with%20premature%20ovarian%20insufficiency%20should%20be%20offered%20sex%20steroid,most%2

This is a brief summary of the link above

Quality statement
Women with premature ovarian insufficiency are offered hormone replacement therapy (HRT) or a combined hormonal contraceptive.

Rationale
Women with premature ovarian insufficiency should be offered sex steroid replacement with either HRT or a combined hormonal contraceptive unless contraindicated (for example, because of hormone-sensitive cancer). Without treatment, these women can experience the effects of menopause for most of their adult life.

This can lead to reduced quality of life and an increased risk of developing osteoporosis and cardiovascular disease, which can lead to early mortality.

This is written by a consultant gynae in the NHS (Dr Currie) and it's pretty clear.
https://www.menopausematters.co.uk/pm-management.php

Why are you finding it hard?

If this is a GP 'gatekeeping' HRT then you need to ask for a referral to a consultant who is experienced in early menopause. OR print off the NICE guidance and take to your GP.

The Daisy Network has free info on the site under Diagnosis and Treatment, but for the forum etc yes, there is a fee to join the charity.

@JinglingSpringbells
The paraphernalia was a load of leaflets telling me how I would feel i had lost my femininity and how devastating it is.
So very depressing outlook
I am 49 now.

I also had a blood test last week and my bone density came out good.

How does that work?

A blood test can't test bone density.

I am assuming using biomarkers (PINP and CTX probably)
All I know is he said my bone density was fine.

Are you in the UK @Pointofinterest

I have a few friends who are seeing consultant rheumatologists and the only way to assess bone density in the UK at the moment is with a DEXA scan.

My understanding is that a PINP is not used to assess bone density and only if someone is already on very specialised drugs for existing osteoporosis or other rheumatic type of disease.

What sort of consultant are you seeing? And- just curious- why are you having the tests anyway?